Smear Campaign

Too Much Information Will Be Shared For Too Long

At some point last year, I received a lovely letter from the NHS that told me that I was due to have a smear test. I could not deal with it at the time. A smear test on top of everything else would have broken me.

Gynae health stuff is not straightforward for me. I have a hospital file of breeze block proportions to prove it. There is a massive amount of trauma connected to it that I have to battle through in order to do what other women sail through with aplomb.

When I see women posting on social media exhorting other women to get their smear test as if it is the easiest thing in the world, it does yank my chain somewhat. I know that not everyone is going to have the Hammer Horror experience that I did and do, but this blithe belief that it is merely ‘uncomfortable’ and the quiet insinuation that women are stupidly endangering themselves by putting off something that will be straightforward feels tone deaf to me.

Having traced an erratic and unconventional path through gynaecological shenanigans and having met many women in similar situations en route, I have come to despise this ‘we’re all in this together' approach to something that has at times, completely ruined and almost ended my life and which has often made me feel very much alone.

A lifetime of erratic and hideous periods, combined with three, traumatic births, five miscarriages and a misdiagnosed ectopic pregnancy that nearly killed me will do that to a woman. It all culminated in a brutal perimenopause with a late diagnosis of PMDD with a twist. The twist for me was that not only was I hyper sensitive to progesterone levels in my body, I was also hyper sensitive to oestrogen.

Towards the end of my useful menstruating life I was out of action for three weeks out of every four. Contraindicated for HRT, the only option left to me was surgery, which for a long time, nobody would give me because I was too young. I was also reminded that my husband might want more babies. Because of course, the only reason a woman menstruates at all is so that she can be a baby making machine for her man. It wouldn’t do to put her wants and needs above his need to show everyone his penis works properly.

This was all exacerbated by indifferent and sometimes downright aggressive treatment from the medical profession, for whom I was mostly just a nuisance. Eventually I was able to get help from a group of incredibly supportive women who were my cheer leaders. They helped me find a sympathetic consultant who put me into chemical menopause. Eventually I was able to get surgery (I had to go private for this because I was considered non-urgent, which would have meant a wait of up to 18 months on the NHS). I should have had a hysterectomy. That was not possible because of scarring from previous surgeries, so I ended up with an oophorectomy (removing ovaries and fallopian tubes) and going into regular menopause. Of course I couldn’t take HRT to help me through it, because it was my hormones that were trying to kill me in the first place.

It’s been a wild ride. A ride that started when I was eleven and only finished when I was forty-seven. Except that it isn’t entirely finished because I still have a uterus, so I still have to have smear tests. And of course, because it’s me, these are not straightforward.

Six months after having surgery, I started to bleed. This should not have happened, so I was booked in for an ultrasound. That showed some thickening of the uterus lining. This can be a symptom of cancer. I was booked in for an exploratory hysteroscopy.

This is a procedure where you sit in stirrups while a nurse pushes a small hosepipe through your closed cervix to open it and fills your womb with water. After this, a doctor threads a camera up into the uterus. Often when they do this if they find something troubling, they will cut out or burn off polyps/growths etc and scrape cells for further investigation. They do all this without anaesthesia. You are advised to take paracetamol before your appointment.

At the same time that I was booked in for the hysteroscopy, I was also booked to see my practice nurse for a smear test.

I dutifully went for the smear. It failed because the combination of my unusually tilted cervix and the lack of cell plumpness due to not having any oestrogen made it impossible to scrape the cells. It was extremely painful, even though the nurse was very kind.

Between the first failed smear attempt and turning up at the hospital, I had two more appointments, one with a nurse who apparently ‘had the knack’ of tricky cervixes and one with the gp when her knack was not knacky enough for me. At every appointment, they tried multiple times to get the sample and failed. In real terms it was as if I had gone for fifteen smear tests in the space of three weeks.

In case you’ve never had the pleasure of a smear test, let me explain.

You lie on a couch with your knees flopped to either side of you and your feet together, tilting your pelvis up towards whoever is about to delve into your innards. They produce something called a speculum which looks very like a complex, metal corkscrew crossed with a shoe tree. They lube it up, then slide this inside you and ratchet it wider to open you up. Once they are happy with the aperture, they take a large cotton bud and scrape it across the cells of your cervix to get a sample that they send to the lab.

Because of the tilt of my cervix, this is always difficult. Even with successful smears, the first attempt was generally doomed and I was required to readjust myself. This meant doing all the knee work and tilting but with the added bonus of bunching up my fists and sticking them under my hips to kind of push my cervix forward from the outside. At one particularly tricky appointment I ended up with one foot wedged in the radiator so that the doctor could get the angle they needed. I’ve never breezed in and out of a smear test in my life.

After all the failed attempts it was decided that I needed to have the procedure done in hospital. I was told I could have it at the same time as the hysteroscopy as they would be in the area at the time and could do both procedures. By now, I was beginning to get quite concerned about the hysteroscopy. From my reading it appeared that just like a smear, a hysteroscopy for me would not necessarily be straightforward. Even the NHS website indicated it might not go so well. In fact, it said that you should seek advice if you had not had vaginal births, were menopausal and not using HRT and had a weird cervix. Basically, it said: ‘Katy. This means you.’

Unfortunately, I was not able to get anyone to talk to me about it, despite my best attempts. I decided to go in on the day and talk to the doctor before the procedure. They couldn’t have been less interested. I was made to feel like I was a silly little girl who was wasting everyone’s time. I agreed to have the procedure.

Things went wrong from the start. They did not have a speculum small enough to fit, despite several extremely painful attempts. The procedure had to be halted while the nurse went to paediatrics to get a child size one. Things really should have stopped here, except by this time I was too paralysed with fear to help myself and neither myself nor Jason who was with me, felt we knew enough to be able to tell them to stop. We were told it would be quick once the right speculum was found. I decided I would endure it. I kept telling myself it would all be over in a minute.

Once the speculum was in, the doctor started to attempt to thread the hose into me. At this point, cold water started pouring out of me, dripping down my legs and pooling all over the floor. The pain was significantly more than two paracetamol could deal with. Shortly after that there was an explosion of agony. It was like being stabbed. Sharp, cold and white. The taste of electricity and metal flooded my mouth and I cried out. I thought I was going to vomit, the pain was so bad. I have never experienced pain like it. I was told to calm down and be quiet. Neither the nurse nor the doctor even looked up, intent on what they were doing, not who they were doing it to.

My temperature dropped off a cliff. I started to shake with cold. The shivers were rippling through me, wave after wave washing up against the nausea. The nurse started barking at me to stop fidgeting, like I had any control over it at all. It was only when Jason said: ‘She’s going blue. I don’t think she should be going blue.’ that they looked up from what they were doing and stopped trying to forcibly ram the hose into me.

The doctor didn’t say anything. She just got up and left the room. The nurse started rubbing me down with that scratchy, blue roll they have for spills. Water rippled across the floor in time with my shivers. She was extremely brusque and didn’t ask me how I was or tell me why they had stopped. She wanted me out, but I couldn’t get out of the stirrups until the worst of the shaking stopped. Everything happened in silence. Jason half carried me back to a cubicle where he helped me get dressed.

Tears were rolling down my face and great waves of shaking still engulfed me. I felt utterly violated. I was awash with shame. Shame at what I had allowed to happen to me. Shame that I couldn’t do what they wanted. Shame that I hadn’t been able to endure it. It was chased by terror at the fact that I would certainly be made to go through this again. I tried to keep quiet, aware that there was just a thin curtain between me and women who were waiting to go in for the procedure. I didn’t want to make it harder for them, and as with all these things, I just assumed it was my fault.

Eventually we were ushered in to see the doctor who had attempted the procedure. She wouldn’t look at me. All she said was that the procedure had failed but she had decided that there wasn’t a problem with my uterus so she was going to discharge me. I asked her about the smear test and she sighed and made a note, saying that someone would be in touch. I was dismissed.

I spent the next two days in bed with a hot water bottle, dosed up on the strongest painkillers I could find. The pain was still off the charts. I was a mess. I couldn’t understand what had happened. I had been told that I was potentially at risk of having cancer and that a hysteroscopy would be the definitive way to find out if that was true. Then I was told that they were sure I didn’t have cancer and I didn’t actually need the hysteroscopy they had just botched. As far as I knew, there was still a chance I had cancer and if I wanted to find out I was going to have to go back to the people who had hurt me and let them hurt me again.

They had done the hysteroscopy so badly it transpires that they had pushed me into clinical shock. The NHS website describes it thus:

Shock is a life-threatening condition that occurs when the circulatory system fails to provide enough oxygenated blood to the body and, as a result, deprives the vital organs of oxygen.

The website said that people in shock need immediate treatment and monitoring. I didn’t get that. I got wiped down with a floor cloth and sent packing.

I raised a complaint with the hospital, sought support from Hysteroscopy Action and waited for my smear test appointment, which I was now dreading.

A few weeks later I went to the hospital for the smear test. Thankfully I was seen by a different doctor. Not that it made any difference in the long run as they failed to get enough cells for a clear test. They wanted me to go back so they could try again. At this point I was still no further forward with the hysteroscopy/cancer situation and facing a potential rerun of both those procedures broke me entirely.

Eventually I was granted a meeting with the head of women’s health to discuss my options. He wanted to give me oestrogen to plump up my cells sufficiently to repeat the tests. When I explained what oestrogen did to me, he dismissed it out of hand as nonsense. He also refused to admit that the hospital had managed my case badly. I took the matter to my MP who wrote a letter on my behalf and who received a reply saying I was a ‘tiresome, hysterical woman.’ It was ever thus.

I progressed the case to the medical ombudsman who eventually admitted they couldn’t do anything. As I burst into tears, the woman I had been speaking to broke her professional demeanour. She said that I should be very proud of the fact that I had persevered in holding them to account and she was sorry there was nothing they could do. It helped a bit. But not enough, and there was still the outstanding issue of the cancer/smear test.

In the end I went back to see the private consultant who had done my surgery. Not only was she utterly supportive, she was so angry at what had happened to me that she booked me in as her NHS patient so I didn’t have the indignity of having to pay for the treatment I should have received in the first place. In the end I had to have a general anaesthetic for the hysteroscopy and she did the smear at the same time. Six months from the point at which everything started, I got the all clear.

You can imagine how much I didn’t need to get a letter about having another smear test and why it was so easy to throw it away and bury my head in the sand.

Moving to London was a chance for new beginnings in many areas of my life, not least of which was my health. When I got the reminder about my smear, I went to see my new doctor, a woman who actually listens. She offered me an oestrogen cream to try that claims to be topical and not transmit into the blood stream. It’s not that using it gives me the best chance of having a successful smear test, it’s that I know I can’t have one without it. In the years since the last attempt, I have become a menopausal husk with a vagina like the Sahara desert. My skin is so thin that if a pair of pants has the seam in the wrong place, it tears me open. The thought of someone jabbing a speculum into me in that state doesn’t bear thinking about. So I said yes to the cream, because I thought I ought to try and be brave.

My smear test is on Monday morning. I had been told to apply the cream every day for four weeks beforehand to give it the best chance of working. I admit that I was terrified. Historically, oestrogen has caused me to have the most horrendous migraines. Migraines that cause temporary blindness, rolling sweats, shakes and shivers. Migraines that last for three days at a time. Migraine that lance skewers of pain through my head with no let up. And vomiting. So much vomiting. Vomiting that twists my guts and rips my stomach lining. Vomiting that doesn’t let me take pain relief and leaves me begging for a sweet, merciful end. I was dreading it.

And it didn’t happen. Not like that.

I was amazed. I began to think that maybe I had made all the oestrogen stuff up. I began thinking that maybe all those doctors before had been right and that it was just me being melodramatic and not stiff upper lippish enough. I wondered if I had been wrong about HRT and I could have been taking it all this time.

Then things started to unravel. Not dramatically, which is why I didn’t recognise it at first. It began with my sleep being nibbled away at the edges. More panic attacks. Waking in the small hours, torn through with adrenaline and the tatters of nightmares. Then my joints started to ache. I felt exhausted, even when I got a good night’s sleep. I started to feel wobbly and like my legs were too heavy for my walks. My chest started to get tight. Then I got a sore throat. I took a Covid test. It was negative. I felt like I had flu. I was increasingly tearful and I could feel my moods beginning to slide out of my control. I felt muffled and the world felt loud.

It never occurred to me that it was the oestrogen to blame, because I didn’t have a migraine. Then, on Friday last week I started with the migraine. It was one of my new, improved migraines, where the headache comes up the rear. These ones feel like flu with added morning sickness. By Monday I was in the grip of a permanent, oily nausea that rolled and roiled through me no matter what I did. Everything smelled terrible. Everything tasted like rotten meat. The headache thudded down into my teeth and jaw, dully hammering away at my frayed nerves. I was losing my ability to think. Not just words but whole sentences went sliding queasily away from me.

As soon as I realised I was reprising morning sickness without the fun of a baby at the end I knew it had to be the oestrogen. I looked up side effects. Short of exploding, I had them all. I saw the gp for a review on Monday afternoon. We discussed it and as I only had a week left to take it, we agreed I would continue.

Yesterday morning I woke up, sat up and then fainted trying to get out of bed. Later that day, when Jason wanted dinner, I had to go and sit in the bedroom with dry toast, because the smell of the cooking was unbearable. I spent the day navigating floods of tears, lost words and a brutal low mood in which I felt responsible for everything and unable to rise to the challenge of doing anything about it.

When everyone else had gone to bed, I sat in the quiet and thought about what was happening to me. It had taken three, short weeks for my life to start unraveling. The life that I have fought so hard to rebuild. The life that I was finally beginning to claim for myself. Even in that time I realised that the fog of depression caused by the oestrogen had rolled in so quietly and so stealthily that I hadn’t noticed it. Then, when I did, it was so good at wrong footing me, I still didn’t believe it could be that. I had a whole host of reasons why it had to be something else, except that three weeks ago, before I started taking it, I was feeling better than I have in years.

The gp had said that it was hard to believe that the oestrogen could do that to me in so short a time and in so low a dose. Even though, by the time I talked to her, I knew that was what it was, I still felt guilty for contradicting her. For knowing my body better than she does. She wasn’t rude and dismissive about it, but just the words made me feel bad, because I have been trained to feel bad.

I had decades of my life ruined by my hormones to the point where I couldn’t hold down a job and I couldn’t care for my children. I have been carried home from days out, vomiting at every motorway services between London Gateway and Leicester Forest East because of my hormones. Because yes, this is what oestrogen does to me (let’s not even start on what progesterone does to me). Why would I make that up? What purpose would it serve? Who would it help?

I wish I could just take HRT. I wish I could just shrug off a smear test and get on with it. I wish I didn’t have to accept that if I want the chance (and it might still not work) of a successful smear test I will have to put up with five more days of feeling terrible in body and soul. I wish it was easy for me to do what other women seem to do so effortlessly.

I wish I didn’t still end up feeling powerless and frightened and disenfranchised from my own body. I wish I didn’t feel violated every time I am required to have a gynaecological procedure because of all the things that have happened to me in the past, and there are so many, many things that have happened to me that I haven’t even begun to touch on here. I wish I didn’t feel guilty all the time for things that are beyond my control. I wish I could stop turning my fear and anger inwards. I wish I could trust my instincts and not feel ashamed of them. I wish I could find a way to build a healing relationship with my body rather than wishing I had been born in another body entirely.

I wish I didn’t feel guilty for even writing this post. Too much information, Katy. Too long, Katy. To self-pitying, Katy. Too scary, Katy. Taking up too much space again, Katy. Nobody wants to hear about your broken body, Katy. That’s private, Katy. Nobody needs to know that, Katy. You’ve said it all before, Katy.

There isn’t a nice ending to this post. There isn’t a satisfactory resolution. It just is what it is.